? re: lymes tests and MS

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Zee1965
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/9/2009 10:07 AM (GMT -7)   
Hello, over 1 1/2 yrs ago I ended up at doc office - double vision, balance issues, etc. long story short- went to neuro - Had mri - had iv steroids - and they found large lesion on cerebellum was the cause. At this point I am left with a diagnosis of Clinically isolated syndrome until when/if I have another flare a dx but until then just dealing with my life as it is now

the issue is - I have continuing extreme fatigue whcih has been the hardest thing to deal with - vision issues haven't cleared and i understand why and can deal with it - BUT - I am now dealing with achiness - kind of bones aches general and knees, elbow- btwen shoulder radiating to forearm where it's a sharp stabbing pain. This is fairly new in the list of things i'm dealing with - i have had two western blots and a spinal tap - both western blots negative - and nothing indicated in spinal.

I don't/haven't had a fever for as long as i can remember - but with pain issues now arising - achy - etc (it's been a month or more with no real relief). I am rethinking things and have heard that lymes can be very elusive. can anyone give input on whether these tests were sufficient to rule out lymes/tick borne disease?

also dealing with degenerative disc issues. i'm 44 years old and was physically very strong and active before all of this. just been dealing with the tired feeling and a few other things for years and about 1year prior to hospital i had tingling right hand that lasted for about 6 months - but thought it was a pinched nerve and ignored it - it magically disappeared one morning- had stomach issues and skin irritations for years. sounds like i'm a mess when i type it all out - just want an answer and having fear over new pain issues and joint aches.

any input greatly appreciated.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/9/2009 11:05 AM (GMT -7)   
Hi zee1965,

Welcome to the forum! We're so glad that you found us!

Do you have a copy of your WB test? If not, get a copy and post your results here so that we can help you. Just because a test came back negative, doesn't neccessarily mean that it is in fact negative. You may have some positive bands on there that are indicative to Lyme.

Spinal taps are not very reliable. Less than 20% get a positive test. The bacteria are known to hide in tissue, bone and muscle so that's why it's so hard to detect.

While your here, read our stick at the top of the Lyme forum tittled, "New To Lyme?....Start Here!" There is some very valuable information in there to help you learn a little about Lyme Disease.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 11/9/2009 2:58 PM (GMT -7)   
Welcomezee1965
 
I've had many of the pains, symptoms etc. you've described.
 
I also had an initial diagnosis of MS.
 
If I was you I would ask my neuro dr. why you had a lesion on the cerebellum.  Also ask your Neuro guy if you can get a  brain SPECT scan.  An MRI is a picture of your brain. The SPECT scan shows how your brain is functioning.
 
You should also get a CD-57 test to see how your immune system is doing.
 
The best thing for you to do, I believe, is to find a Lyme Literate Doctor (LLMD). Also see if you can find a Lyme Support Group in your area.  Maybe you don't have Lyme but a LLMD can help rule it out. You can find an LLMD in your area by asking here.
 
I believe I was bitten by a Lyme tick in Aug.2004.  I had many hospital visits, tests etc until I got a clinical Lyme Disease diagnosis in Nov. 2006.
 
You've come to a very good place to get info and hear about the experiences of others.
 
saxmar

Zee1965
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/10/2009 1:26 PM (GMT -7)   
Hi There - i do have the earliest western blot but not my most recent.

The one from last may read like this;:
IgG Result 1
fererence range: <5
Unit: Bang

Interpretation Nonconfirmatory:
Specific srologic response to B Burgorferi is not detected. (This was underlined.) Cannot rule out early infection during which low or undetectable antibody levels to borrelia burgdorferi may be present.

Bands detected : 39
Unit: kDa

IgM Western Blot: 0
Reference Range <2
Unit: band

Does this help -
makes no sense to me.
Again the
spinal fluid - result just said - Lyme Disease CSF - Negative - Performed by Mayo clinic

Any input re: the test results is appreciated - all greek to me and my brain
The lesion - is not typical to MS - she thinks I had a virus but doesn't know - They really have been torough re: my testing - I've had tests for b12, herpes, myestensia gravis, lymes, CBC, vitamin D (mine was extremely low which is indicated of Autoimmune), etc. etc. etc. I've had tons of bloodwork done - MRI's, MRA's, EVP's, etc. ALL normal except Vit D and the lesions and my degenerative disc issues. We are in a pickle.
Everything seems to be so illusive in diagnosing what is happening.

Thanks so much for your responses and looking forward to more input.

Zee1965
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/10/2009 1:30 PM (GMT -7)   
PS - forgot to say that the week I had this big event that made me finally seek help - (and i believe caused the lesion to become totolly inflammed) was one of undue stress (father in law in hostpital in ICU- working - traveling all over the place with emotions etc. ) my body was completely run down. I had smaller issues that I could disregard presvisouly that I think everything that week just blew up. Just looking for the alternative and trying so hard to make sure they aren't missing something that is also so elusive - Lymes disease.
Do't know where to turn.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 11/11/2009 12:10 AM (GMT -7)   
Hi Zee,

Do you know what lab your doctor used for the WB? It seems the only band that was reactive was band 39, which is BB specific but there is usually a 41 in there too.

Are you seeing an LLMD now? A Lyme Literate Medical Doctor goes by your symptoms too. Lyme Disease is also a clinical diagnosis.

When will you be getting your newer tests in?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Zee1965
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/11/2009 6:40 AM (GMT -7)   
HI - my doc did the second western blot when i transferred to her about 8 months ago which she said was negative and i left it at that - since she's my primary neurologist now and i've stopped moving around i didn't request the copies of my latest bloods. however, I will now do that. about LLD - I have not seen one.

I stopped thinking about potential lymes when I asked for the 100th x to my doc "are you sure it's not lymes" and she without hesitation and looked me in the eyes and said firmly "you DO NOT have lymes disease". she has also consulted the other docs in her practice re: my case. however, my family keeps worrying that i could be and they just are not detecting it. my father had lymes for 1 year b4 they dx'd him - however his joints swelled to size of tennis balls - he saw 7 docs and they said it's arthris bursitus, etc.

Finally he got to a doc that did the western blot and pulled fluid from his swollen kneee and that confimed his case (one the worst his doc said he'd seen) of lymes. He went on antibiotics and was "cured" in 6 weeks. he most recently had another tick borne diseae - the name escapes me. He had fever immediately was lethargic, etc. But based on his case - i have never had a fever (honestly not since i was a child) and have not dealt with many joint issues or pain up until recently - my story begins several years ago with random non specific symptons and then the "event" that brought me down was 1 1/2 years ago which i haven't recovered from. I'm left with a diagnosis of clinically isolated syndrome or ADEM (which i know it isn't because Adem is typically preceeded by fever, some viral infection) which was not the case for me. Just searching and searching - i live in VT - can you help me in knowing where do i look for a LLD. I'm sure it's on this site, but to tired to look!! : )

Thank you for all of your answers and input - i am on a quest - and feel like i'm my own doc at this point since they've given up until I have another "event". in the meantime - I am living 50% of my life and struggle daily to maintain a positive outlook and move ahead.

saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 11/11/2009 7:50 AM (GMT -7)   
Zee1965

Start a new posting with the subject LLMD in Vermont needed.

Someone should get you the info you need. To protect doctors we do not use and or give LLMD names here where we post.

Good Luck

saxmar

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 11/11/2009 10:14 AM (GMT -7)   

Boy, does your comment about having to be your own doctor hit the nail on the head - for a lot of us!

Just an aside about your test being done by Mayo Clinic.  Somehow we have all come to believe that Mayo is the end-all be-all of medicine.  In reality, they are no better than any other larger medical facility as far as the latest treatments/testing.  Much of their clinic is quite outdated - the marble entrance (of their main facility) is quite grand, but the appointment rooms and waiting rooms are from the 60's or 70's!  Parts of the clinic are better than others, but I personally have only been in the outdated parts, and that was as of a couple years ago.  Bottom line is that you want the best treatment and the appearance of the clinic shouldn't matter, but when you are sitting in the waiting room or the appointment room and you realize just how long it's been since they updated the most basic aspects of their clinic, you begin to wonder if they truly do have the best equipment to do your testing.  Why, when they are bringing in millions of dollars, can't they spend a little of it on making it at least a little more appealing and confidence building - over the last 30-40 years, a few bucks could go into new flooring and cupboards in the exam rooms.  Let's face it, we are human and appearances do matter.  When you hear comments about just being a number, that is exactly how I felt going there.  I live within traveling distance of Mayo, along with 2 other very good medical facilities - Mayo is my LAST choice & only for 2nd opinions.  They don't even have a toll-free phone number and you pay for parking...they are not really all that patient-friendly compared to the other major medical facilities in this area.   They get their great reputation for their research, and do you know how they get their research?  By HOUNDING their patients to become part of time-consuming, long drawn out studies!  I had a second opinion there and for 2 years I received multiple requests to become part of different studies.  It was almost bordering on harassment and I'm not exaggerating.  Once, I agreed to be part of a study because I felt it was worthwhile.  When I got the 3/4 inch thick stack of forms I had to fill out and GIVE TO MY PARENTS AND SIBLINGS TO FILL OUT also, plus more that I didn't realize went along with this, it was not worth the $15 they were going to give me for my time, and I backed out!  You won't get any better treatment or answers from Mayo regarding Lyme's, thyroid issues, hormone issues, or any other "controversial" health issues than you will at any other progressive mainstream health care facility.

 

 

 

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